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devasted
Regular Member


Date Joined Dec 2013
Total Posts : 38
   Posted 7/26/2014 9:07 PM (GMT -6)   
A.ziff.... Looked briefly at xifaxan site and it says it is not recommended for child-Pugh scores of c or d. He is a C . So is anybody else taking this a C or D and doing o.k. With it ?

devasted
Regular Member


Date Joined Dec 2013
Total Posts : 38
   Posted 7/26/2014 9:27 PM (GMT -6)   
Also, he just now mentioned to me that he thinks that he is still putting on water.....did anybody else do that after tips ?? He just got drained before the procedure on Thursday.

A.Ziffle
Veteran Member


Date Joined May 2011
Total Posts : 2071
   Posted 7/27/2014 6:52 AM (GMT -6)   
I still retained a small volume of fluid for about a month after TIPS. I was worried and asked the Doc. he said " It's normal immediately afterwards to see fluid build up in small volumes. Your body has grown used to having the fluid removed by medical procedures, It needs time to re-learn how to function as it should naturally removing the fluid." Give it time. However you may want to ask your doc if the fluid appears to be getting excessive. If TIPS isn't done precisely it can be easily blocked off, A few millimeter's too far in and it will become obstructed.

themiz
Forum Moderator


Date Joined Feb 2013
Total Posts : 1891
   Posted 7/27/2014 8:23 AM (GMT -6)   
Remind me, DV...is your husband on a transplant list? Big Hugs
themiz, Forum Moderator-Hepatitis

Wife of themister, a fine man living with ESLD.
Eradicated Hep C geno 3a SVR July 2012-- TIPS, HE, January 2013
Transplant list, Mayo AZ- July 11, 2013 MELD 14

“Out of suffering have emerged the strongest souls; the most massive characters are seared with scars.”
Kahlil Gibran

devasted
Regular Member


Date Joined Dec 2013
Total Posts : 38
   Posted 7/28/2014 12:14 PM (GMT -6)   
Themiz he is not on transplant list.....interventional Dr. Said he should talk to liver Dr about it.....his liver Dr has too many patients and doesn't keep up. When you call there it is always voicemail and sometimes they get back to you in a week or never......it's bad.....so frustrated and when you try to address issues they don't like it.
Thanks for the hug : )
Today he is super sleepy......slept all nite and so far today....gets up to use restroom and back to sleep....ate a handful of fruit drank some water....back to sleep....
Thanks Ziff for the info on still retaining water after tips..... And what are signs of it clogging ???

devasted
Regular Member


Date Joined Dec 2013
Total Posts : 38
   Posted 7/28/2014 12:26 PM (GMT -6)   
Ziff, a stint clogging would be just more ascites right ? I sure hope this thing works.

themiz
Forum Moderator


Date Joined Feb 2013
Total Posts : 1891
   Posted 7/28/2014 1:31 PM (GMT -6)   
How many BM's today? Your guy needs 3-4 loose BM's per day. Your boyfriend may not really know if he is having HE. You want to watch and make certain he is having the number of BM's needed post TIPS.

Also, how many times per day is he taking Lactulose and what dose. Themister takes 30-40 ml, 4x per day. He also takes Xifaxan 550 2x per day.

And sleepiness is part of HE, which is present after TIPS. That was one of the biggest changes for themister. He slept 16-18 hours per day. And he declined without the increased dosage of Lactulose and addition of Xifaxan. Since you have not got Xifaxan yet, you want to write down BM's until you get the number needed with Lactulose.

HE can sneak up on you. You have dealt with HE before I think?

Since there are other things that have similar symptoms to HE, he may need a trip to the ER if you are not ok with how he is doing. I feel for you. The first year after TIPS was so difficult for us. The HE came on in spades, and themister was sure the bottle said 2 doses, and he did not know he could increase that if he did not get the needed BM's. Try to check his cognitive abilities. The flap test (holding hands out in front like stopping a car). Also, I have themister count backwards by 3's from 34. He can do that at a certain pace on a normal day. On HE day, he can not...and struggles, no matter how long he takes. Just an idea. Balance, staggering, are other symptoms. Let us know. Big Hugs
themiz, Forum Moderator-Hepatitis

Wife of themister, a fine man living with ESLD.
Eradicated Hep C geno 3a SVR July 2012-- TIPS, HE, January 2013
Transplant list, Mayo AZ- July 11, 2013 MELD 14

“Out of suffering have emerged the strongest souls; the most massive characters are seared with scars.”
Kahlil Gibran

devasted
Regular Member


Date Joined Dec 2013
Total Posts : 38
   Posted 2/23/2015 10:59 PM (GMT -6)   
Hello Angels ! It has been a long while since I have been on here. He has been pretty good post Tips. He had his Tips procedure done in July. The procedure went well. He only needed paracentesis one time one week after the procedure.

Since July it has been the HE-lactulose struggle. He looked really good and had good color to his skin.

Now, he is blowing up again with abdominal fluid. The doc's nurse practitioner looked at him and said it was fat. It's not fat and getting bigger. He has had some breathlessness laying down and I brought that up and she ignored it. We went to family doc for his sugar being 400 and metformin was ordered. Metformin is not helping but A1C is ok. So I tell family doc about breathlessness plus congestion and chest pain and he ordered an albuterol inhaler.

I'm upset because I think he is on the road to CHF from Tips. Heart issues are one of the complications listed. None of these doc's are concerned. I don't want his heart to get so overworked that it swells up because wouldn't that make transplantation a problem ? Other than these new things we are doing ok keeping warm watching it snow.

themiz
Forum Moderator


Date Joined Feb 2013
Total Posts : 1891
   Posted 2/24/2015 6:22 AM (GMT -6)   
Nice to see you here today!

Where are you with the transplant listing?

Since your guy was MELD 14 at one point, is now post TIPS, has HE and ESLD issues...I hope you have sought out a transplant evaluation and he is now under the care of a transplant team. Do you know his recent MELD ? What schedule does his hepatologist have him on for labs and scans?

Most important. If he is not under the care of a hepatologist at the best transplant hospital you can go to with his insurance, I strongly suggest you seek that out. The focus when pre-transplant hepa's will be light years ahead of a family doctor or GI. They know what to look for post TIPS, like this new breathing issue. Then you can be confident with the dx and treatment.

Themister, my husband, has been listed for transplant since shortly post TIPS two years ago. He was referred when he had TIPS. As great as his GI was, and he was an excellent GI, ...nothing compares to the level of care now with the Mayo AZ pre-transplant group.

Sorry about the new complications, but glad to see you popped in. Big Hugs
themiz-Forum Moderator-Hepatitis
Wife of themister, a fine man living with ESLD. Transplant list-2013

“Out of suffering have emerged the strongest souls; the most massive characters are seared with scars.” Kahlil Gibran

A.Ziffle
Veteran Member


Date Joined May 2011
Total Posts : 2071
   Posted 2/24/2015 6:26 AM (GMT -6)   
He needs to go back and see the transplant team. MRI and sonography need to be done. The first year is a critical time for observing flow rates in the TIPS or checking for obstructions. We are talking hair widths can be critical in placement and thus effecting performance of the shunt. It took about three months to start seeing a marked increase in weight gain for me.

Even though I had been on the low sodium diet for a year prior to TIPS it was still a battle at times not to grab table salt or watch for food product labels. Make sure he's adhering to the low sodium diet and getting as much exercise as possible. If Encephalopathy becomes a issue he'll need to up the dosage of Lactulose until it works. Just my thoughts but some drugs cause constipation as a side effect. Look at his prescriptions for that possibility. No poop or not regularly enough and bloating will surely occur. The other obvious effect of constipation is the lack in removal of toxins from the body.


Ziff

themiz
Forum Moderator


Date Joined Feb 2013
Total Posts : 1891
   Posted 2/24/2015 6:58 AM (GMT -6)   
Devi,
Link for IU transplant department. The family doctor (especially, a PA in a family doctor office), will not be adequate care for someone with the complicated issues of liver disease.

I would not want to have a doctor thinking he has asthma or something "normal" patients present with, when he may have a serious complication from a TIPS or many issues of liver disease.


@ Ziff...looks like we were posting at the same time this morning :)

Big Hugs

iuhealth.org/transplant/
themiz-Forum Moderator-Hepatitis
Wife of themister, a fine man living with ESLD. Transplant list-2013

“Out of suffering have emerged the strongest souls; the most massive characters are seared with scars.” Kahlil Gibran

devasted
Regular Member


Date Joined Dec 2013
Total Posts : 38
   Posted 3/4/2015 8:28 PM (GMT -6)   
Thanks A Ziff and Themiz :-) He has been seen by a hepatologist all this time. I don't like what his Dr is doing definitely.

He has been calling for three days trying to see his hep Dr with no return call as of yet. So by tomorrow we might be going to the ER to get a paracentesis since no return phone calls.

I used the link that Themiz added for me and I hope we hear back soon from them :-)

We asked his hep Dr last visit in January if we could meet transplant team and he said no. I just don't get that at all..... I bit my tongue to control it devil

He saw his interventional radiology nurse practioner Feb 1st and she said his stent was still open. I pointed out that he was taking in water and breathing hard. She said he is good.

His albumen is lower 2.7 his bili total is 2.5 his Pt is 16.0sec his Inr is 1.48 ammonia is 117. These have all changed in the last month but his

Alt is 24 and Ast 36 so those two look good for him.

I just know when his albumen gets lower he always blows up with water. He is sticking to his diet well and staying off salt and now has to not eat sugar and count carbs.
i appreciate both your replies very much :-) Thanks Angels :-) And I hope Mama Lama and her hubs are well :-)

themiz
Forum Moderator


Date Joined Feb 2013
Total Posts : 1891
   Posted 3/5/2015 10:20 AM (GMT -6)   
Unless your guy has a MELD in mid teens, he may not be evaluated for the transplant list yet. But I see he was a MELD 14, and had a TIPS...and I would want him with a transplant center. I would want to have an answer for why he is not being referred at this point.

A LOT can happen between January and March.

I like a hepatologist affiliated with a transplant center. You may not be able to self refer at the transplant center I gave you. Call and ask for the pre-transplant liver department. There is a world of difference when you get to that level of care. You can not wait 3 days for a return call with post TIPS with a mid teen MELD. Think ER at that point.

You want to know your guys MELD and keep and eye on it with each lab. I can not see his creatinine and sodium, but here is the calculator to use with his labs.


www.mayoclinic.org/medical-professionals/model-end-stage-liver-disease/meld-na-model

We see things with our loved one's on a daily basis. The medical folks do not. Take good care. Big Hugs
themiz-Forum Moderator-Hepatitis
Wife of themister, a fine man living with ESLD. Transplant list-2013

“Out of suffering have emerged the strongest souls; the most massive characters are seared with scars.” Kahlil Gibran

A.Ziffle
Veteran Member


Date Joined May 2011
Total Posts : 2071
   Posted 3/5/2015 2:35 PM (GMT -6)   
I can't think of a reason why his Hepatologist would not lean to the side of caution if he has been compliant with the program. I was being seen every three months after TIPS and told to weigh myself daily to insure I was not seeing a rapid increase in weight. Some weight gain would naturaly be expected or at least in my situation. I was painfully thin boardering on malnutrition when the surgery was done. My stomach was as huge as a basketball but due to muscle wasting and lack of hunger my frame was thin. I gained weight afterwards because my hunger came back. I always felt full prior, Go figure!!!

If at any time during that three month interval I had concerns or issues appeared I was instructed to call the transplant coordinators office ASAP. You would not be over reacting to be concerned about breathing issues. A MRI and a sonagram imaging was done also in the first year every so often. If you consider how critical the positioning of the shunt is placed it's easy to understand why the would want to check it real good initially once it's been done. I have been fortunate enough to have had caring people in all depts. of UNC. They explained and demonstrated along the way as to what they were looking for and why. It's pretty neat, The human body that is. Of course I wouldn't recomend anyone go my route of learning about it but it's been educational at the least.

HE in my case has been somewhat mild but nevertheless it's always present. Waiting to sneak up on me. Prevention is the best way to go. Take the lactulose stuff even if you don't feel you need it. The taste of it never has grown on me. Nor the results (The trots, The restroom waddle or what ever you prefer). Alot of this is a learning curve for each person individually. Go with your gut feeling if you feel somethings wrong. You are your only advocate.


Ziff

devasted
Regular Member


Date Joined Dec 2013
Total Posts : 38
   Posted 2/22/2016 9:47 AM (GMT -6)   
Hello again ! Haven't posted in quite a while. This past May his Tips stint was clogged. So interventional Dr went in and placed a stint at each end of 1st stint to try to keep it open and flowing. That went pretty well ! After his stint placement they gave him diluadid( prob misspelled) and other painkillers and he kept begging for more. And, they would give them to him. He was acting out with the nurses in a sexually suggestive manner. And they acted like they like the attention. I of course hated every second of it and knew eventually his mind would clear with lactulose.
Fast forward to today, it is a daily battle to get him to take lactulose. He takes xiafaxan twice daily. His personality is terrible. This HE is so hard to mentally deal with. His son stays away and my children(grown) stay away and get mad that I don't visit them enough. I cannot leave him alone right now. His family doesn't have a clue. I maybe might have one decent hour with him a day. The rest of it is HE.
Now they gave him oxycodone. That even adds to the nasty behavior. He lies about his He to the Dr and I told them it's worse. They said just take your lactulose and he might take it once a day. He won't go to the hospital when he is really bad. What do I do ? He absolutely will not listen to me whatsoever. My nerves are so shot. If He gets even worse what will that be like ? He catnaps and is up all day and night. He gets mad if I'm asleep and wakes me up. I'm exhausted.
Any tips on dealing with his behavior is appreciated: ) love and appreciate all of you beautiful souls on this site : )

A.Ziffle
Veteran Member


Date Joined May 2011
Total Posts : 2071
   Posted 2/22/2016 11:51 AM (GMT -6)   
So sorry to see this happening to you. Is he at all capable of watching himself? I had to, myself. Is someone caring enough to watch him in your family? Maybe a old friend? You have to have some time for you, less you'll be just as sick as he is.
I wish I could say it's rare for this subject to come up. It does regularly. You aren't the only person out there or in this forum with this problem. Maybe some of the caregivers will chime in soon and share their thought's.



Ziff
"The truth will set you free, but not before it pisses you off."

themiz
Forum Moderator


Date Joined Feb 2013
Total Posts : 1891
   Posted 2/22/2016 5:25 PM (GMT -6)   
I am so sorry to hear you are dealing with the monster known as hepatic encephalopathy (HE), Dev. It just stinks.

I am stunned his doctor would RX narcotic pain meds for a person with uncontrolled HE. We hear nightmare stories of HE and Ambien, benzo's or narcotic's. Those drugs make HE so much worse.

I know the cost of this disease on a caregiver. I have lived your nightmare. I wish I knew something that would sort this out and make the HE disappear for him,... and you. Please, try to get away for a break. Even if it is just to Starbuck's for a quick coffee every few days. Big Hugs
themiz-Forum Moderator-Hepatitis
Wife of themister, a fine man living with ESLD. Transplant list-2013

“Out of suffering have emerged the strongest souls; the most massive characters are seared with scars.” Kahlil Gibran

rkayne
Regular Member


Date Joined Jan 2014
Total Posts : 93
   Posted 2/27/2016 12:46 PM (GMT -6)   
Sorry you are dealing with this, many here have. It is the most difficult thing to watch someone you love become someone you do not know, especially when they are there some of the time. My wife doesn't remember a lot pre-transplant. She went downhill so fast, and so...impressively that I had time to myself. Too much, in fact. I ended up working 2 jobs to keep all in order. She spent almost 5 solid months in the hospital.

I cannot stress enough getting in with a proper transplant team. The whole team. When things get bad, especially with HE, at least a night in the hospital is needed to clear the ammonia. You just can't deal with it at home.

If you are getting brushed off and he is able to be listed, I hate to say it...but have you considered moving to a place you CAN get a good team? I am not sure, don't remember where you are located, but I know a lot of issues in this country right now revolve around health care, or severe lack of it, depending on the state you live in. I know people who have moved just to get healthcare.

This is one of those situations where it only takes a moment for everything to tumble down, and fast. I have watched it and never thought for a moment that it could happen so fast.

I hope your docs are listening, but if not, get thee the heck away from them and find a team that actually sees ahead, instead of just maintaining and treating it like it is nothing.

I hear a lot of this going on in your posts and it hurts, as there where several docs in my wife's care who were of this bent. I immediately went to the head's of whatever floor/care she was in and got that nipped in the bud.

Sometimes you have to be that squeaky wheel, there were many days I was sure those docs/nurses would have been happy if I was one of those who did not care, but as I watched people die left and right in the time I spent with her at the hospital, alone, uncared for...I just got louder and more adamant. It helped that I am a chef so fed them goodies OFTEN, lol.

We are at 2 years post transplant, after me having head nurses tell me over and over 'This is it, she might last the day' to docs telling me they would never transplant her, she wouldn't make it to that magic 6 month mark, to docs straight out saying she just needs to accept, and I needed to accept, her pending demise.

There is always hope, but sometimes you have to make it happen. The question I would have for you, is if you are up to the challenge. It is a mighty endeavor, very mighty indeed.

Your whole life has changed, his whole future has changed, but it does not need to be for the worse.

devasted
Regular Member


Date Joined Dec 2013
Total Posts : 38
   Posted 8/28/2016 8:25 PM (GMT -6)   
Hello again ! They have taken him off the oxy thank God ! Still dealing with HE and today is not a good day around here. His Dr. Will not let him meet the transplant team. Maybe because he is on medicaid ? Maybe because he is a large very tall man ? I couldnt get a straight answer. He is 6*6/245 .
We cannot afford to move. I lost my job because of his appts. If i left him home and went back to work he would either be in jail for his crazy temper or be at the neighbor girls house who does anything for $20.
When he takes his meds right a couple days a week he is ok. When he doesnt he is a fireball of rage and anger and finds somebody to unleash it on. His family is about done. They just dont understand or just dont want to deal with it. I cant blame them because he is so terrible.
It seems to me, unless he is playing with me that when he is clear minded after taking lactulose-he then realizes what a nitemare he has been. Its like during the H.E. Times he doesnt realize he is being absolutely crazy. Im hanging in there somehow ! I pray alot. Love you angels and pray everything is good as possible !

A.Ziffle
Veteran Member


Date Joined May 2011
Total Posts : 2071
   Posted 8/29/2016 5:41 PM (GMT -6)   
There are no easy fixes or answers for HE. Lactulose is horribly sweet tasting and it takes large quantities at times for it to be effective. Holding the nose doesn't work. You may try and putting it in his beverages or something to dilute it. If hell has water fountains, Surely they flow freely with lactulose. Carol (Mod) told her husband he has a choice. Orally at home or rectally in hospital. It must be taken else he'll go crazy. It can lead to coma if untreated. Xifaxan is great but it works in the lower intestines cleansing fragments of toxins left over from the lactulose. One is no good without the other for HE.
Relationship strains are inevitable with HE. It kills the desire of any love one to be put through the trials of it. Take him to ER or have him admitted via police/ambulance if it gets violent. He ain't in his right mind. I was never violent but have a talent for cutting to the bone with words. My wife suffered greatly and hardly a day goes by I don't feel ashamed of how I was. For me it was almost feeling out of body at times. Watching myself uncontrollably going down hill. Struggling to put a small sentence together or yet to make that sentence mean something. Hard as I try it was if I had no control or helpless to stop what was wrong. Pride still exist even if your off your rocker. Lashing out made short conversation and less room to look like a dullard. Hope you can get him straightened out.


Ziff

MamaLama
Forum Moderator


Date Joined Oct 2010
Total Posts : 4794
   Posted 8/31/2016 9:29 PM (GMT -6)   
devastated,

This whole situation takes me back to a place that was almost too dark to revisit. My partner was AWFUL. I cried every day. But amazing as it is, the things that started to work (with the lactulose and xifaxan) were his failing health AND AA. He was obligated to do 6 months of a documented alcohol cessation program. I took him many days a week (they say to go as many days as you drank) and he tried. Some days he could barely walk, but he went. They would not take him for pretransplant preps until they were certain he would not relaps and was truly serious about that new liver. Mike's MELD score was 26 when he first went to the TP center for a first appointment. But under their care, the right meds and about 1 week a month in hospital, his MELD came down, his craziness settled some. It seemed he was better with a few jugs of albumin and balanced electrolytes. In May 2011 he was transplanted at Jackson in Miami and the most amazing thing. From a crazy man who could not always find the bathroom or tie his shoes, he wanted to know who died...Obama or Osama...he could hear the nurses talking and didn't have his hearing aids in. Amazing...from blithering to attention to world events with one nice healthy liver!!!!! He wrote me a note saying he was so sorry to have put us all though this, and so thankful and sad that someone died that he could live....kinda of spiritual, no?

Good luck to you. I needed to see a counselor for a while to realize I needed to care for him,but not to get hooked on feeling bad about myself or being angry back at him...he was sick, mean, and did I say sick? I had to let it blow by me, and make sure I was eating, resting, and taking breaks.

Let us hear from you,

Mama Lama
MamaLama, Forum moderator - Hepatitis
Partner received liver transplant (May 1, 2011) FL
Hep C 1a Treatment - Sovaldi/Olysio (March - May 2014)
Undetected since week 4. Undetected 12 weeks post treatment.
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